Back again

[Guest guest]

Back again

I'm back again. Lindsey was dx with RSS almost two years ago,but I'm not

convinced she has this,but then I start thinking maybe she does and I join again

lol.

Anyway, Lindsey biggest concern right now is her speech, she will be 8 in June

and still has very little air sounds,and she has verbal and oral apraxia,along

with oral motor weakness. I was doing a search on apraxia again about 1 month

ago and It led me to a site,pub med or something where a child was apraxic and

had Floating harbor syndrome. I joined the group,to learn more about it,and

was amazed how similar it is to RSS. Some of the pictures the people would send

in looked so RSS,but were dx as FHS. 2 big features in FHS, is a wide

nose(some didnt)& severe expressive language delay and MR,although most of the

people on the list have never had their kids tested,but are several years behind

their peers,just like Lindsey,but Lindsey is not MR,so RSS fits her better if

she has it..

Why am I telling you this? I have no idea! I just want to share,and say Hi!

Jennie

[Guest guest]

Hi Jennie:-)

Welcome back! I hope we can help you in your journey to help Lindsey. That

is what we are here for.

J

>

> Reply-To: RSS-Support

> Date: Sat, 6 Mar 2004 12:42:22 -0500

> To: RSS-Support >

> Subject: Back again

>

> I'm back again. Lindsey was dx with RSS almost two years ago,but I'm not

> convinced she has this,but then I start thinking maybe she does and I join

> again lol.

>

> Anyway, Lindsey biggest concern right now is her speech, she will be 8 in June

> and still has very little air sounds,and she has verbal and oral apraxia,along

> with oral motor weakness. I was doing a search on apraxia again about 1 month

> ago and It led me to a site,pub med or something where a child was apraxic and

> had Floating harbor syndrome. I joined the group,to learn more about it,and

> was amazed how similar it is to RSS. Some of the pictures the people would

> send in looked so RSS,but were dx as FHS. 2 big features in FHS, is a wide

> nose(some didnt)& severe expressive language delay and MR,although most of the

> people on the list have never had their kids tested,but are several years

> behind their peers,just like Lindsey,but Lindsey is not MR,so RSS fits her

> better if she has it..

>

> Why am I telling you this? I have no idea! I just want to share,and say Hi!

>

> Jennie

>

>

[Guest guest]

Hi , Your my only response so I would be happy to share.

Lindsey has a high pitch,denasal sound to her. She has verbal and oral apraxia.

She knows how shes supose to say a sound,but she has a difficult time motor

plannng the action. We don't know if Lindsey is unable to say 'f' or s' and any

other air sounds needing oral pressue is due to the apraxia,or maybe a submucous

palate or another palate problem. We get a work up at a childrens hospital soon

I hope!

There is lots of information on apraxia, just put in that word in any search

engine. An apraxic child usually speaks with vowels, the constanants are harder

to motor plan. With intense therapy alot of apraxic kids do very well.

Jennie

mom to Lindsey 7.9

[Guest guest]

Well, after another brief hiatus, I'm baaaaacccckkkk! Just like the poltergeists! Last week I had a bout of eye trouble, couldn't see to read for more than a few minutes & pain. Then Saturday night, actually about 2am Sunday, my 5yo grandson , who was spending the weekend, developed croup & we were up the rest of the night doing breathing treatments, inhaling steam, etc. In the morning I took him to the E.R. He's still got a croupy cough, but is doing much better. He's on a 5-day course of our favorite drug Prednisone. But I ended up sleeping most of Sunday & Monday, then just lay around watching TV & reading Tuesday. So, it's back to life as I know it. I'll be trying to catch up on the messages today.

Ramblin' Rose

Moderator PC Magazine’s 2007 editors’ choice for best Web mail—award-winning Windows Live Hotmail.

[Guest guest]

So how's the eye? Did the pain resolve? ************************************** See what's free at http://www.aol.com.

[Guest guest]

Yeah. I called my eye doc's office & got a recording to go to E.R. or call my PCP! My PCP was signed out to the doofus I had seen in the past; an internist who is real whiny. He wouldn't order Pred Forte without me being seen & said if it was bad to go to the E.R. Well, it wasn't that bad by the time he called me back (almost 3 hrs. after I called), so I kept using the Refresh Liquid Gel drops. That night woke up about 2am with a horrible cough & shortness of breath. He had asthma as a baby, but seldom has problems now. I gave him a couple of treatments with my nebulizer, which helped, but neither of us slept the rest of the night. He was scared & could only breathe sitting straight up, so I held him close to me. I couldn't get Theresa, his mom, to answer her phone (she doesn't have one in the bedroom) and I had never gotten a consent for treatment, so was afraid that if I took him to the E.R., we would just have to sit around for hours until they could get phone consent from Theresa. I'd rather sit in my own bed, and wasn't in dire straits. Finally about 8am, I got Theresa on the phone & took him in. His chest xray was clear; they said he had croup & gave him another breathing treatment, plus a 5-day course of Prednisone. While I was there I got 2 of the consent forms, one for Jon & one for . Any of you who keep your grandkids should have these; most hospitals provide them. Theresa just had to sign them; no notary necessary. So I now have them in my purse, just in case.

Anyway, by the time we went to the E.R. my eyes were feeling pretty normal (my normal). I started back on the Restasis Tuesday & have been okay since.

Long answer to a simple question, huh?!? Thanks for the support, Queen Bee.

Ramblin' Rose

Moderator

From: tiodaat@...Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Back againDate: Thu, 31 May 2007 00:37:46 EDT

So how's the eye? Did the pain resolve? **************************************See what's free at http://www.aol.com.

More photos, more messages, more storage—get 2GB with Windows Live Hotmail.

[Guest guest]

I haven't been around for a bit either. I had a week or two when I was completely wiped out with a lot of nausea, headaches and weakness. I am feeling better though so I am baaaaccckkk too. lol DebbieRose wrote: Well, after another brief hiatus, I'm baaaaacccckkkk! Just like the poltergeists! Last week I had a bout of eye trouble, couldn't see to read for more than a few minutes & pain. Then Saturday night, actually about 2am Sunday, my 5yo grandson , who was spending the weekend, developed croup & we were up the rest of the night doing breathing treatments, inhaling steam, etc. In the morning I took him to the E.R. He's still got a croupy cough, but is doing much better. He's on a 5-day course of our favorite drug

Prednisone. But I ended up sleeping most of Sunday & Monday, then just lay around watching TV & reading Tuesday. So, it's back to life as I know it. I'll be trying to catch up on the messages today. Ramblin' Rose Moderator PC Magazine’s 2007 editors’ choice for best Web mail—award-winning Windows Live Hotmail.

Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Yahoo! Games.

[Guest guest]

Deb,

It's good to see you back too!!!!!!!!!!

, I know you are still fighting those eyes-- hang in there-- and do take care of you.

Darlene, someday I will catch up with you-- I hope you are pacing yourself and not doing to much with trying to help out your daughter and her business. I'm also grateful that you are well enough to go out aand help her on occassion. Yeah!!!

Kim-- where are you dear friend? We all want to know if you are back here in the states getting the care you need. Can one of the kids let us know how you are doing?

Rosie, Rosie, Rosie---- wanna arm wrestle? I know a monkey that will take you on.

Love to all,

Tracie************************************** See what's free at http://www.aol.com.

[Guest guest]

Tracie, I don't think I'd want to take on a monkey; a gerbil maybe. I'm actually getting my granddaughter a gerbil & all the fixin's (sounds like Thanksgiving dinner, doesn't it?!?) for her birthday tomorrow, the big 13. I'm thrilled that at 13 she wants a gerbil & not some kind of scary clothes or something.

Ramblin' Rose

Moderator

From: tiodaat@...Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Back againDate: Mon, 4 Jun 2007 02:21:19 EDT

Deb,It's good to see you back too!!!!!!!!!! , I know you are still fighting those eyes-- hang in there-- and do take care of you. Darlene, someday I will catch up with you-- I hope you are pacing yourself and not doing to much with trying to help out your daughter and her business. I'm also grateful that you are well enough to go out aand help her on occassion. Yeah!!!Kim-- where are you dear friend? We all want to know if you are back here in the states getting the care you need. Can one of the kids let us know how you are doing? Rosie, Rosie, Rosie---- wanna arm wrestle? I know a monkey that will take you on. Love to all,Tracie**************************************See what's free at http://www.aol.com.

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